Pmr

[diduck]

I still haven’t seen a dr it was an over the phone consultation and as I have had pmr before the symptoms were similar with unbearable pain in upper arms and shoulder was just told to have steroids when I said I don’t want steroids as I have had them before and don’t like to side effects was told you can have a short term dose but I know hasn’t tine it took 3/4 years to get off them , I am at the moment self medicating with turmeric and cpd capsules but nights are horrendous ,

[PMRpro Ambassador]

If you want relief from the symptoms your only option is pred I'm afraid. The second wave of PMR may be totally different from the first - in every way, the dose you need, the duration, everything.

What side effects did you find most intolerable? Many can be minimised or mitigated when you know how - and people here will advise what they did.

Just remember that unmanaged PMR is more likely to progress to GCA and if that were to happen your choice will be risk irreversible and potentially total loss of vision or take very high dose pred. Low dose pred has fewer adverse effects even if you might need it for longer. Even if the PMR doesn't progress, the unmanaged inflammation is also causing damage increasing the long term risks of several things including cardiovascular disease and peripjeral vascular disease. It isn't a simple case of pred bad, no pred good.

[diduck in reply to PMRpro]

But I haven’t even seen a dr it’s all been phone consultation no blood test to even see if inflammatory markers are high so how can he tell ?

[PMRpro Ambassador in reply to diduck]

He can't - but I was answering your comment where you said you told him you didn't want pred as you didn;t like the side effects. He MAY have wanted to see what happened with a short trial of moderate dose pred which does provide another brick in the wall of diagnosis - if it doesn't improve with pred it is less likely to be PMR and if it improves dramatically then it is more likely.

[diduck in reply to PMRpro]

But why use something as horrible as ores to just see if it works , it could be a multitude of things and I thing he has a duty to at least see me x

[PMRpro Ambassador in reply to diduck]

It could yes - but PMR only responds to pred and is unusual in responding quickly to a moderate dose. The alternative either don't respond to pred or do so only partially. If that is what you are looking at, there isn't much point using something that doesn't work at all for PMR or many of the other things either.

If you have PMR badly then there is nothing horrible about pred - I have yet to have anything from the pred that was worse than the effect of PMR. And I can assure you I had a pretty torrid time for 6 months when I was on methyl prednisolone which is what is usually used here so I do know about the side effects of pred. I lost 5 years of my life to PMR in my 50s - pred gave it back to me.

[diduck in reply to PMRpro]

I’ll think about is x

[DorsetLady PMRGCAuk volunteer]

My comments would be along the lines of PMRPro’s, but having been there I would be more concerned that it is GCA rather than a return of PMR.

If that’s the case then please don’t turn your back on Pred.

[SnazzyD]

When I was on high doses for GCA, comparative low doses for PMR looked quite inviting. I am just grateful that I haven’t ended up with large vessel vasculitis. “Getting off them” is normally a function of the disease process not because of the Pred itself. In those whose adrenal function doesn’t switch back on, the corticosteroids given are at a dose that the body would normally produce daily. Short term doses don’t tend to blast it and you go back to normal; if your body has decided to attack itself you have to react to that until it is done. I’d take the night pain as a warning that something different to your current approach is necessary unfortunately.

[piglette]

Your doctor seems very sensible offering you a short term dose of pred, which they probably would have done anyway if you had had a face to face appointment. If the pred does not work you can stop them after a week or so and no harm done. If you say you don’t like pred your doctor is put in a difficult position as they have done all they can Covid or no Covid. What are you expecting them to do?

[diduck]

Speak to me and discuss not just had out willy nilly with no discussion

[5lupins]

During Covid you just have to trust a little more. Doc did seem a little abrupt but...... OH has had major surgery and brain radiotherapy over the last few months most of the discussions were over the phone. You just have to deal with it as things are or let go and follow your own path. But as many have said there is a risk involved. Take care and choose wisely.